Each year, across the world, the last
day of February is marked as #RareDisease Day;
it is a day set aside to raise
awareness of over 6,000 rare diseases.
is the definition of rare? Something not occurring very often, something
unusually good or remarkable. However, in our home and many homes like ours,
the definition of rare is dramatically altered.
daughter, Jayde, lives with #PosturalOrthostaticTachycardiaSyndrome, #EhlersDanlosSyndrome
, #SuperiorMesentericArterySyndrome, and Nutcracker
syndrome. I have #PosturalOrthostaticTachycardiaSyndrome, #EhlersDanlosSyndrome, and Tarlov Cyst Disease. Except for #PosturalOrthostaticTachycardiaSyndrome,
all these illnesses are rare diseases.
each diagnosis, the word rare took on an entirely new definition. Rare means
doctors are dismissive, shying away due to their fear of not wanting to admit
they do not understand. It is being told your disease is only in your head,
overcome it, and your disease will magically disappear. Rare is living with the stares and assumptions of others that you are
anorexic or faking your illness. Rare is being scolded, “Do not label your
child.” Rare is nails on a chalkboard each time you hear, “Get well soon.” Yes,
it is a kind sentiment. So why is it annoying? Because your head knows, there is no cure, even though it is your heart’s greatest desire.
is the isolation you feel after losing the majority of your friends because
they cannot understand your reality. It is also finding a tribe of people who
appreciate and accept you for you because they live in the same tormented hell. Rare is the pill
case with five rows for each day of the week, ensuring you do not forget to take your medication. It is
becoming more of an expert in your illnesses than most doctors. Rare is
the mask you don for the world to see, smiling on the outside while your body is searing in pain. Rare is the frustration
of needing medical supplies, but you cannot purchase those supplies due to a
virus outbreak causing mass hysteria. Rare is a rolling cart in your living
room, full of medical supplies, an IV pump, and a sharps container. Rare is
closing your eyes, waiting for the sweet relief of sleep, waking each morning, praying the new day will be better than the last. Rare is the terror you
experience when a new symptom rears its head, hoping it is a fluke and will quickly
vanish. Rare is comprehending, you are considerably different, with the consuming
desire to be like everyone else. Rare is the heartache that comes from knowing
you will not graduate with your senior class because your surgeries and illnesses have made it impossible to keep up with school. Rare is
buying the concert tickets, hoping you are well enough to attend the show six months
later. It is mourning the life you can no longer live while learning to
celebrate the mundane and smallest of victories. Rare is discovering
there are only three doctors who specialize in operating on your spinal
condition. It is the six-hour flight across the country in excruciating pain
and no sleep, so your daughter can have her wish granted to photograph the
California Coast – and knowing you would do it again to see the sparkle in her
Rare is having your child’s diagnoses
unlock your own medical mysteries. It is then living with the knowledge and
guilt that the genes you passed onto them, is what makes them ill. Rare is the indescribable symbiotic bond you share with your daughter from needing to be more
than her parent. Rare is a multitude of rollercoaster emotions, from fear and hope
to elation and #Depression.
Rare means digging deep and finding the hidden reserves of strength and determination
to press on. Rare is living a life bathed in prayers, hopes, and wishes.
Rare is my daughter, rare is me – Rare is us